Misunderstanding chronic migraine
For Aimèe Parfrey, 24, it begins with a visual aura – a static line in her vision that disrupts her sight and lets her know that a storm of pain is coming. Next comes speech disruption. Parfrey thinks she is speaking normally, but what comes out is “pure gibberish”.
Things get much worse before they get better. “Usually migraine progresses from the vision, to the speech, to the pain, which can come on gradually or like a massive thunderclap,” she tells me. “Both are just as awful and I wouldn’t wish it on anyone.”
Parfrey is one of about 350,000 Australians who suffer from chronic migraine. To some extent I feel her pain. As a migraine sufferer I also experience the disruption that regular migraine can wreak. For me it starts with a flashing light that dances around my eye, followed by stiffness in my neck and searing pain on one side of my head. Sometimes migraine makes me vomit and occasionally my speech slurs.
Migraine is extremely debilitating. In fact, experts describe it as an intermittent disability. The Global Burden of Disease study, updated in 2013, described migraine as the sixth-highest cause of years lived with disability worldwide.
But while I experience one or two migraines a month, chronic migraine sufferers such as Aimèe Parfrey suffer headaches for 15 days or more a month, with migraine on at least eight of those days. In real terms, this means that a person who suffers from chronic migraine has a headache or migraine for more than half of each month.
Unsurprisingly, living with chronic migraine is extremely difficult. Parfrey, who has been having regular migraines since the age of 16, says that she has become a shadow of her former self. “[I had to quit my job as a] legal assistant because it became too high stress and my brain couldn’t handle the work expected of me,” she says.
“I was called lazy and told I wasn’t putting the effort in, when in reality I was coming in [to work] during a five-day, level-eight migraine that had me up all night vomiting and I had no vision in my right eye.”
On top of this, Parfrey has developed mental health issues. “I have a lot of concentration problems and I have bad anxiety and depression. I rely heavily on my partner to get me through the day,” she says. Unfortunately, this is a common scenario for migraine sufferers, in fact, The World Health Organization (WHO) notes that anxiety and depression are significantly more common in people with migraine than in healthy individuals.
Another common frustration among migraine sufferers is that most people wildly underestimate the severity of the condition. “I have people telling me they have headaches, too, and that if they have Panadol and lie down they are fine, and that I should try it,” says Parfrey. “People tell me if I lose weight I’ll be fine. They say I need to exercise, or change my diet, or stress less, or put a banana on my head. What they don’t understand is that I’ve tried everything and that I am tired of fighting. I am tired of trying to find a method that works, and I am tired of trying to explain how serious this condition is.”
Most migraine sufferers have similar stories. I’ve been told to reduce alcohol (I’m teetotal) and do more exercise (at a time I was training for a half-marathon). It’s frustrating but also very isolating. The reality is that the general public are not aware of the effect migraine has on individuals and on society as a whole. The impact is huge.
Because migraine peaks during the productive years of late teens to 50s, the WHO believes the financial cost to society – mainly from lost working hours and reduced productivity – is astronomical. A 2011 survey from Headache Australia, a division of the research, education and support group the Brain Foundation, found that 94 per cent of migraine sufferers report that migraine has prevented them from going to work, with 83 per cent having to miss work more than a few times a year. Twenty-one per cent said migraine has prevented them from taking on a full-time job. That adds up to a lot of missed workdays.
There is also a social cost. In the same survey, three out of four migraine sufferers said they have been unable to attend an important family event such as a wedding, baptism or birthday party due to migraine.
Another huge challenge is the impact of migraine on family life, particularly when migraine sufferers have children. Michelle Smith, 40, is a chronic migraine sufferer and mother of two. She tells me that her migraines feel like a coin toss. “Heads I go to hospital and tails I don’t, but the kids just think it’s normal, which kills me,” she says. “My five-year-old now knows how to ring triple-zero for an ambulance.”
Smith, who lives on the New South Wales Central Coast, says that the biggest challenge is lack of support. “I live an hour away from family and my husband works in Sydney. I had an afternoon where I felt [a migraine] coming on, I took my medication and [pain relief] then went to bed. But I couldn’t relax knowing I had to pick my five-year-old up from school,” she says.
Smith’s children are well versed in migraine protocol. “My gorgeous girl knows how to get herself afternoon tea and is happy to watch TV quietly. If I need help she knows where to get a bucket from, as I get nausea and vomiting with my migraines.”
I can relate. My own children, aged six and eight, know to bring me an ice pack for my head if I can’t get up in the morning because I’ve woken with a visual aura. Similarly, I have childhood memories of my mother putting herself to bed in the middle of the day and not emerging till evening. Migraine is hereditary and if one of your parents suffers from it, there is a 50 per cent chance that you will, too.
Migraine also disproportionately affects women – lifetime prevalence is 22 per cent for women and 10 per cent for men. This is because migraine frequency and severity are affected by hormones and, as a result, often change during adolescence, pregnancy and menopause.
Although some chronic migraine sufferers such as Michelle Smith have frequent trips to hospital because of migraine, a huge number of migraine sufferers don’t seek help. The WHO found that both in the United States and Britain, only half of those identified with migraine had seen a doctor for headache-related reasons in the previous 12 months, and only two-thirds had been correctly diagnosed. Most were solely reliant on over-the-counter medications.
Gerald Edmunds, the secretary general of the Brain Foundation, says migraine is notoriously difficult to treat because the triggers vary so much from person to person. “Migraine isn’t an ordinary headache, it’s a neurological disorder. What will trigger a migraine in one person who is susceptible might not another. There is not a definitive set of triggers.”
For this reason, many migraine sufferers treat themselves. Edmunds notes, however, that if everyone with migraine went to their general practitioner, then across Australia people would be lining up in the streets.
There is hope. New treatments are being developed and trialled all the time. The Brain Foundation keeps a register of migraine sufferers – there are currently 20,000 names on their list – and uses it to keep signatories informed of new developments.
But much more research is needed. Edmunds notes that in Australia, the lack of research funding is a huge issue. The latest research grant application that the Brain Foundation submitted to the government was knocked back. It is Edmunds’ belief that this is due to the invisible nature of migraine. “If migraine sufferers were impinging on emergency wards in the way that old-age facilities are impacted by dementia, then the government might be more interested,” he says.
Aimèe Parfrey would love to see more research into chronic migraine.
“Those of us with chronic migraine are in immense pain all the time, and we desperately need more support,” she says. “There is not enough research into the condition. We are still a mystery.
This article was first published in the print edition of The Saturday Paper on Mar 24, 2018 as "Heading the bill". Subscribe here.